Baby Stellan, aka "MckMuffin", aka "MckMiracle", has been taken to the E.R. after a recent illness quickly progressed until he was turning blue.
On Tuesday morning, Dennis Reed was taken to the E.R. by ambulance, bleeding profusely from his mouth, losing five or six large clots, on top of an on-going fever. All the kids pulled together when they heard Christine shout, "Call 911!", and four hours later Dennis was released home. While Dennis was at the hospital, a neighbor came over and cleaned the pools of blood for the family and watched the kids. Dennis was very clingy after coming home, and continued to loose clots from his incision site. On Friday he had his palette checked by the surgeon, who said it was not infected, but put him on antibiotics just in case. They found out that Dennis had only lost half a pound since his surgery. There was an extra flap of tissue, though, that may need to be removed in a future surgery.
On Friday, CDH baby Olivia's sats droped to the 40s and her heart rate went down significantly. She was first extubated and then re-intubated with a larger tube. After that they bagged her which did not work, then moved her back to the oscillatory vent which inflates and holds the lungs open, which did not work either. Then a drainage tube was inserted into her lungs, and they got quite a lot of fluid out. Finally she started to respond, but with her oxygen being so low for so long, it's very likely it caused damage to the brain, but how much they can not yet tell.
Baby Kayleigh, CDH warrior's parents were recently told Kayleigh's time on earth was coming to an end. But Kayleigh decided otherwise. They now have a plan of action, but it's certainly not going to be an easy road, nor one with a guaranteed survival. Please keep this PICU Princess in your prayers!
On the 17th, CDH & Situs Inversus (Heterotaxi) warrior Veiyah had her worst episode yet. The nurse came in to do her blood draw and Veiyah got so upset that her oxygen saturation went down to below 50 (normally for her, should be 70's and up) and her heart rate dropped from 130 bpm to 30 (thirty) bpm. The nurse started to balloon air into her breathing tube, but when her heart continued to slow, chest compressions had to be started as well. A minute later she still wasn't improving, and the nurse called for help, and everyone ran in and attempted to revive her, while her mother yelled for her baby girl to come back, to not leave her, too, like Veiyah's twin sister Aderah did while still in the womb. Finally she calmed down, and her sats rose. Miraculously, just one day later, Veiyah was able to be extubated. And though she was still in the PICU on Christmas, that is fine for Veiyah's family. After all, Veiyah is alive and fighting, and that is the best present they could have asked for.
8 year old Eden Adams has been battling Stage IV Neuroblastoma for four years, and as of right now, it is no longer a matter of how to beat the cancer, it is a matter of keeping her as comfortable as possible, and praying. Praying for Eden, whatever the outcome may be- whether a life saving miracle, whether a peaceful passing...Princess Eden needs all the prayers she could get!
Okay, I'm sure I'm forgetting a few kids, but this should keep you busy for a bit!
~Alex
Butterfly's and Rainbows
Love Through Action
